Not All Doctors Are Equal: A Reminder to Advocate For Yourself

Writing about my experience with MS is something I’ve been doing for some time now. With that, often at my encouragement (I believe sharing and discussing our stories with each other is important), I receive a lot of comments and private messages (and I do my best to answer every single one, even if it takes me some time). Sometimes, when I hear enough people talking about a particular issue, I feel that I need to dedicate a whole article to it. Recently, I’ve had a lot of people share an all-too-common story with me. Basically, they go to their doctor, inform them of a particular symptom, and are told that it is in no way MS. Many times, that doctor turns out to be incorrect. This makes me want to remind everyone that not all doctors are equal.

Finding the right doctor

I’ve spoken on this subject before. I even said that my #1 advice for the newly diagnosed is to find the right doctor. This all bears repeating and is applicable to anyone with MS (or any illness for that matter). I’m not trying to attack medical professionals, but my own experience and the experiences of many of my readers have proven to me that there are many doctors who are simply not up to speed on a disease like Multiple Sclerosis. Knowledge and treatment methods seem to be all over the place, even with some doctors who consider themselves MS specialists. This forces MS patients to do a lot of research on their own and to advocate for themselves if they want to get the proper diagnosis and treatment.

How do you know?

This is an especially maddening issue for the newly diagnosed and those trying to get diagnosed. It’s hard to know what to look out for when you have no idea what’s wrong with you. How do you find an MS specialist when you don’t even know what MS is? This is just one reason it takes so many people a very long time to get diagnosed with MS. Once you are diagnosed, how do you know your doctor is the best choice? Well, you have to be knowledgeable. It’s important to read up on your disease and to at least understand the basics. Compare what your doctor says to what is on a respected website, like MultipleSclerosis.net or the National MS Society (be wary of other sites at first because not everything on the internet is true, not to mention you don’t want to scare yourself). I’ve heard of many people who have had doctors dismiss their pain because they think it can’t be a symptom of MS, when even the National MS Society has a whole section dedicated to pain. That’s a pretty sure sign the doctor may have some outdated knowledge.

Go with your gut

Along with fact checking some of the things they say, go with your gut. If you feel they aren’t helping you, it’s time to explore other options. If you feel they’ve give up on you, then it’s time to give up on them (I’ve literally had a doctor say “I’m sorry, but I’ve done all I can do”; I left and went to another doctor who was actually able to help me dramatically). You should always seek a second (or more) opinion. There can be a certain amount of reverence for doctors in this country that can cause people to feel bad about seeking additional opinions. You have to put that by the wayside if you want proper care. A great doctor will encourage you to seek additional opinions, not vice versa. Remember, they’re there to serve you.

It’s going to be work

Having MS isn’t easy and neither is finding the right doctor and treatment. You’ve got to be willing to advocate for yourself, which can be difficult. Bringing a friend or family member to an appointment can be extremely helpful when it comes to questioning the doctor and getting a feel for them. Recognize that your closest doctor may not be the right one, no matter what their qualifications are. Having to travel to get the best care is all too common for MS patients. You have to be willing, as inconvenient as it may be, to travel, to wait for appointments, to get additional tests. Having MS will test your patience, there’s no doubt about it, there is a lot of waiting involved.

So even though I’ve mentioned it before, I felt I again needed say how important it is to advocate for yourself. Do your research, question your doctor, and be willing to work to get the best care you can find. There is a lot to be said about healthcare and insurance and availability. That is only one part of the problem many of us face these days. Being able to find quality, knowledgeable health care staff in this day and age is also a massive problem.

Thanks for reading!

Devin

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Comments

Hey Devin, great article which as you know from reading mine this hits home for me. This is my 3rd “specialist”…I saw the new one 2 days ago and her first statement to me is that I do not have MS according to my MRI….ummmm what? So after an exam and getting records (LP, blood work etc) from my other doc she decided she would go with it. She can’t give me anything for nerve pain bc I’m allergic to all of them, yet she wants me to go for nerve conduction testing(why if I can’t take meds) she wants me in pain management but I explained I can’t do opioids bc they trigger severe migraines which is a whole other issue but she told me to think about it. She put me on ritalin but after getting that filled it says if I have thyroid and/or Raynaulds not to take (did she even read my records?). This is so frustrating. At this point I just want to get my Copaxone and leave me alone.
Thanks for such a great article…I would love to share.
thanks, Kimberly

Conventional doctors may attack since I love Alternative medicine. They may withhold what I need and have ego/write 20 errors in a report and call me names/mock/laugh/try to hurt me. Alternative medicine…most awesome people who understand and listen/care/are kind/know how to really help health/give hope and help.
Many MS people may not get thyroid medicine due to a strange TSH. They may need it and Vit B12 methycobalamin shot and no gluten/fish oil/Vit C etc.. Conventional doctors may scare them away from Alternative medicine and try to use “big words” to act like they are smart/wise, but they don’t heal MS people since they are only covering symptoms and withholding what works.
Alternative medicine people treat people with respect/love/care and know what is needed for the basics of health. They may offer Hair tests and more that help more than blood tests/MRI etc. LDN is less than $1 a day which may help 99% of MS people.
People need to learn to not stay with someone who is not helping them and find another person to help. Ask God to guide you to the right doctor/person to help. Chiropractors/acupuncturists/Alternative doctors and more may help health fast. Two weeks of no gluten and I had 1000X more energy and felt 20 years younger and health issues went away.
People need to learn to help their own health. Doctors don’t have time to explain everything and people are smart/capable to learn.
I have not decided if I should try to correct every mistake in reports, but now they have invented a person who I am not with all their errors. I want to avoid the hospital. They do the opposite of what I need. I want to always get help at home my whole life and avoid Conventional medicine always since they don’t understand and enjoy hurting people who love Alternative medicine.

I agree that there is a difference in docs. When I was dx’d I saw a general neurologist ( I still see him – this is 13th Year) but a friend said ( insisted) I get a second opinion. I was sure the dx was correct but I went to see the the local MS specialist guru. Based on the two hours I had to wait and the short visit with him, I decided not to see him again. He agreed with the dx. I do a lot of reading about MS. I have a nursing degree my husband to physician and I keep up with the latest information best I can. I think I do a lot more reading and get a lot more information than my Rolla just does however I’m doing well. He’s not a great communicator however he says as long as I’m doing wellAnd taking medication, I don’t need any MRIs and I don’t need this and I don’t need that. He may be right. I have thought about trying to find someone else, but it’s really not that easy to do.

Thank you itasara! There are certainly some very good general neurologists out there, just as there are some really crappy specialists. You just have to find the right person for you. I do feel a little suspect that your current doctor doesn’t think you need regular MRI. The disease can still be progressing even if you feel fine, until the day that you no longer feel fine. Regular MRIs can help check disease progression and make sure your medication is still working. Just feeling good doesn’t mean the disease isn’t still slowly working.

I am an unmarried female in the US with no family. I have encountered a serious bias toward me throughout the entire process of diagnosis and “treatment.” The tendancy has been to try to paint my MS symptoms as a psychological disorder. Securing a diagnosis in 2007 did not make anything better. At diagnosis, no medical history was ever taken because it was an emergency…stroke was suspected. The neuro on call in the ER played it safe and DXed RRMS, although I was likely SPMs by that time. My current DX is SPMS. I had symptoms of MS for 29 years before it was finally diagnosed. Still not getting adequate care from neurology. I feel better not dealing with the medical proffession. There is no cure and the drugs are mainly aimed at reducing inflammation.

Devin,
I’m going to Cleveland Clinic to find better care, My MS doctor tells me that the constant tingling and numbness in my feet and legs is not MS. I’ve had other tests of my back and an EMG, which did not reveal anything specific. I know that this is MS! I fight through each day, in pain, and keep moving. I do take Gabepentain, which gives some relief. I’m hoping that the MS doctor at Cleveland Clinic is less dismissive of my pain!

Pain has been my first and main MS issue. Standard pain meds did not work for me. However, I have used both Lyrica and Cymbalta and both have provided great relief. I currently use Cymbalta – it works well for my neuropathic pain. I had tried Vicondin – just made me loopy and and having to vomit. Same thing with codine meds – they are worthless to me.

Thank you Nobu! Pain is a huge issue for me as well (https://multiplesclerosis.net/living-with-ms/the-torture-that-is-chronic-pain/). I too have had some success with Cymbalta. I still suffer from bad pain, but the Cymbalta makes is much much more bearable. I didn’t always believe that, but after weening off Cymbalta a few times (not easy), I discovered that it really has been beneficial to me!

I just had an appt with my MS specialist. I asked her to comment about pain medication being appropriate so that my local physician would be more comfortable prescribing them for me. She said I don’t give or recommend pain medication. The opiate crisis is affecting my ability to manage the pain I have without shame or guilt. I don’t advocate daily use of opioids, but I need them sometimes to function and to participate in activity outside my home. I could write my own article.

Thank you Kimber! Sadly this is becoming a more and more common an issue. Those that can really benefit from these medications are now not only having trouble accessing them, but being made to feel bad about it. If possible, see if you can find a pain management specialist.